I'll say it a million times. For me, it is definitely a dysregulated immune response. I guarantee my brain fog, depression, anhedonia, anxiety, hair shedding and even E.D. are all a cause of this crazy amount of inflammation I have in my body. Still trying to get some prednisone to experiment..

i actually just had to get a TB skin test done for a job I'm applying for and not even the slightest welt formed.. My immune system is like on STEROIDS or something cause I'm basically the Hercules of health. (Besides the fact that it's attacking me to make me feel like ass)

also noticed my mosquito bites aren't nearly as itchy and turn red for like a day or two and then BOOM gone. Not even kidding.

I just called my doctor and in my last blood test I wasn't tested for my Vitamin A levels so I requested another blood test and I will report on my results ASAP.

The literature seems to suggest a retinoid "toxicity" effect. Serum measurements may even come back within range which further complicates things. Some on here recommend to avoid foods that contain vitamin A and some see improvement, I on the other hand do quite well consuming vitamin A foods (sweet potato, carrots) and in the case of one Indian boy who lost his night vision was taken off the med and supplemented with vitamin A retinal palimate and made a full recovery. Perhaps something to do with the receptors not functioning properly and how the body processes Vitamin A is what we feel. Obviously, it is a very important Vitamin the body needs to function. Why we all feel old, depressed, tired, thirsty, dry, synovial fluid dried up, joints clicking, skin and hair thinning, hormones weak is the million dollar question. Is it reversible? Or is it permanent and are we looking for the fountain of youth which any old person is also looking for?

30 minutes ago, macleod said:

The literature seems to suggest a retinoid "toxicity" effect. Serum measurements may even come back within range which further complicates things. Some on here recommend to avoid foods that contain vitamin A and some see improvement, I on the other hand do quite well consuming vitamin A foods (sweet potato, carrots) and in the case of one Indian boy who lost his night vision was taken off the med and supplemented with vitamin A retinal palimate and made a full recovery. Perhaps something to do with the receptors not functioning properly and how the body processes Vitamin A is what we feel. Obviously, it is a very important Vitamin the body needs to function. Why we all feel old, depressed, tired, thirsty, dry, synovial fluid dried up, joints clicking, skin and hair thinning, hormones weak is the million dollar question. Is it reversible? Or is it permanent and are we looking for the fountain of youth which any old person is also looking for?

Could accute poisoning be the cause of such drastic side effects? I'm curious; who here has gone to see what their vitamin levels are at? Maybe it's possible to reverse the effects if we're able to stabilise the vitamins within our bodies and avoid worsening the effect. It obviously won't happen overnight but if we took the right steps and continued with a healthy diet and exercise maybe our bodies will return to a normal state? I'm not saying the vitamin imbalances within our bodies are the reason for the issues. I looked up Vitamin A toxicity and the side effects were pretty much the side effects of isotretinoin:
Source: http://www.healthline.com/health/hypervitaminosis-a#symptoms4
"Symptoms of hypervitaminosis A
Symptoms vary based on whether toxicity is acute or chronic.Headachesandrashare common in both forms of the illness.
Symptoms of acute vitamin A toxicity include:
drowsiness
irritability
abdominal pain
nausea
vomiting
increased pressure on the brain
Symptoms of chronic vitamin A toxicity include:
blurry visionor other vision changes
swelling of the bones
bone pain
poor appetite
dizziness
nausea and vomiting
sensitivity to sunlight
dry, rough skin
itchyorpeelingskin
cracked fingernails
skin cracks at the corners of your mouth
mouth ulcers
yellowed skin(jaundice)
hair loss
respiratory infection
confusion
In infants and children, symptoms may also include:
softening of the skull bone
bulging of the soft spot on the top of an infants skull(fontanel)
double vision
bulging eyeballs
inability to gain weight
coma
In a pregnant or soon-to-become pregnant woman, defects in their baby can result with too much vitamin A.
If youre pregnant, dont take more than one prenatal vitamin each day. There is enough vitamin A in prenatal vitamins. If you need more iron, for example, add an iron supplement to your daily prenatal vitamin. Dont take two or more prenatal vitamins, as the risk of deformities in your baby increases.
If youre pregnant, dont use retinol skin creams, which are very high in vitamin A.
The correct amount of vitamin A is crucial for the development of a fetus. However, excess vitamin A consumption during pregnancy is known to cause birth defects that may affect a babys eyes, skull, lungs, and heart."

Sorry if this has already been brought up before but I just think that if we can stabilise our bodies long enough to stabilise our vitamin levels we may return to a normal state?

3 hours ago, Colinboko said:

I'll say it a million times. For me, it is definitely a dysregulated immune response. I guarantee my brain fog, depression, anhedonia, anxiety, hair shedding and even E.D. are all a cause of this crazy amount of inflammation I have in my body. Still trying to get some prednisone to experiment..

i actually just had to get a TB skin test done for a job I'm applying for and not even the slightest welt formed.. My immune system is like on STEROIDS or something cause I'm basically the Hercules of health. (Besides the fact that it's attacking me to make me feel like ass)

also noticed my mosquito bites aren't nearly as itchy and turn red for like a day or two and then BOOM gone. Not even kidding.

Ive gotta agree - inflammation inflammation inflammation!!

But how to treat it beyond taking just fish oil and turmeric - gotta take something stronger I'd suggest....Prednisone

I bang on a lot about gut health and have had a gastroenterologist check it all out only to conclude nothing wrong with my gut, one persons opinion I guess and they might be right from a bacteria point of view but what about immune issues?

wouldn't it be a gastroenterologists job to consider an overactive immune system??
Surely they diagnose more than just gut bacteria health?

These are questions I should've asked specialist. If anyone can recommend who we see for Immune related disorders pls share!!

If not a gastroenterologist than who??

1 hour ago, macleod said:

The literature seems to suggest a retinoid "toxicity" effect. Serum measurements may even come back within range which further complicates things. Some on here recommend to avoid foods that contain vitamin A and some see improvement, I on the other hand do quite well consuming vitamin A foods (sweet potato, carrots) and in the case of one Indian boy who lost his night vision was taken off the med and supplemented with vitamin A retinal palimate and made a full recovery. Perhaps something to do with the receptors not functioning properly and how the body processes Vitamin A is what we feel. Obviously, it is a very important Vitamin the body needs to function. Why we all feel old, depressed, tired, thirsty, dry, synovial fluid dried up, joints clicking, skin and hair thinning, hormones weak is the million dollar question. Is it reversible? Or is it permanent and are we looking for the fountain of youth which any old person is also looking for?

It's certainly manageable. Until we find the solution. There are plenty of examples from this thread, propecia threads, and CFS threads of people finding things that have helped them lead a normal life. I know for a damn fact that I'm done letting my life get ruled by this stupid drug that if corticosteroids or anti-inflammatories make me feel better then I'm definitely going to find a way to make them work. Because right now, I'm miserable, and I know it's selfish, but I have my own life to live, my own aspirations and I'm not going to sit around and wait for a cure when the symptoms can definitely be treated.

2 hours ago, mDi said:

Could accute poisoning be the cause of such drastic side effects? I'm curious; who here has gone to see what their vitamin levels are at?

On 6/2/2017 at 1:25 AM, macleod said:

I have a question, do we know precisely, what is in Isotretinoin? I mean is it just 200,000+ iu of Vitamin A? Are there any added ingredients that we're missing? I think first step right now would be get a hold of some original Isotretinoin before its all gone and find out if there is anything else in play.

What may be occurring is that certain retinoid pathways were disrupted. We know retinoid receptors play a role in neurotransmitter production, including areas of interest in schizophrenia spectrum disorders. Then of course there is the baggage of all-trans retinoic acid, the metabolite of Accutane responsible for the "chemo" effects. Taking Accutane was like taking a mega dose of vitamin A, yes, but a little different too.

It seems like people whose bodies cannot deal with Isotretonoin seem to go into some kind of shock where the organs begin to fail due to the intake. I truly believe that anyone can recover but it will take time. I never should have taken it, the warning of birth defects was already a HUGE red flag.

4 hours ago, mDi said:

I truly believe that anyone can recover but it will take time.

I doubt it. I finished my Isotretinoin course 8 years ago and I remain in a miserable condition ever since I've swallowed the first 20 mg pill (and during most of the course I only took 10mg/daily - which is considered a very low dose).

Isotretinoin can permanently damage the gastrointestinal tractof susceptible people (and you will never know if you aresusceptible or not, you will find out only after you swallow the first pill - it's a pure lottery).

I, for example,ended up with Crohn's disease, or at least my interpretation of the symptoms (chronic yellow loose stools, severe fat & fructose malabsorbtion, lactose malabsorbtion, very loud stomach gurgling), indicate Crohn's disease.

I don't understand why dermatologists continue to prescribe Isotretinoin to acne sufferers, especially now that we know that acne can be controlled with dairy-free, low glycemic diet and a proper supplementation (egcg, curcumin, zinc, vitamin d3 etc.).

2 hours ago, mDi said:

It seems like people whose bodies cannot deal with Isotretonoin seem to go into some kind of shock where the organs begin to fail due to the intake. I truly believe that anyone can recover but it will take time. I never should have taken it, the warning of birth defects was already a HUGE red flag.

I've said this before, if you're indicating that problems will go away as a result of time, they won't!!!
Part of my reason for saying this before was in relation to people on this forum having their say then disappearing when it all becomes too much, each to their own I guess but I'm more inclined to hang around till I see where we end up as a group.
I don't know how people can just bury their head in the sand, disappear and think that time will heal them, how the fuck does that work??

There's been glimpses of recoveries, for a while the exciting one for me was doing the liver flushes but I got discouraged after doing 5 and feeling no better. I got my hopes up again last year with seeing a gastroenterologist but that went nowhere in the end, in fact I've had more help speaking to a local chemist about gut health than I did with a specialist.

Anyway, take it from long-term victims, time will not heal you, in fact you will start to feel worse in late 30's to 40's, the stiffening of the joints becomes a real problem esp with the lower back and this is coming from someone who practices yoga etc.

The brain fog too I'm afraid will get worse, in the workplace this has been horrendous for me, esp in meetings when I need to be mentally fit and on top of it, it's such a crap side effect.

In the end though I've only got myself to blame,I mean I knew full-well about the 20 years of anguish & suffering when I started treating mild backne back in 1998, I thought to myself nah that sounds like a fair trade off for getting rid of some pimples, I'll sign up to lifetime of pain and mental anguish.....

So, I've been connecting the dots with some of my symptoms: tinnitus, blue entoptic phenomenon, visual snow, photosensitivity, persistent after images, raynauds phenomenon (in winter), joint pain, depression, anhedonia etc. etc. and all seems to point towards a "hyper metabolism" of the brain.

I want you to take a look at this video and pause at 9:11 and look at the symptom profile of hypometabolism and tell me what you think.

is hyper or hypo metabolism the culprit?

7 hours ago, VanceAstro said:

I doubt it. I finished my Isotretinoin course 8 years ago and I remain in a miserable condition ever since I've swallowed the first 20 mg pill (and during most of the course I only took 10mg/daily - which is considered a very low dose).

Isotretinoin can permanently damage the gastrointestinal tractof susceptible people (and you will never know if you aresusceptible or not, you will find out only after you swallow the first pill - it's a pure lottery).

I, for example,ended up with Crohn's disease, or at least my interpretation of the symptoms (chronic yellow loose stools, severe fat & fructose malabsorbtion, lactose malabsorbtion, very loud stomach gurgling), indicate Crohn's disease.

I don't understand why dermatologists continue to prescribe Isotretinoin to acne sufferers, especially now that we know that acne can be controlled with dairy-free, low glycemic diet and a proper supplementation (egcg, curcumin, zinc, vitamin d3 etc.).

Please dont doubt it. If I solve my libido and ED, I will consider myselfy cured.
I improved very much over time. I did'nt do anything special but believe me I was in a very very bad situation. I was sick and tired, tremor, tinnitus, weakness, suicidal state, vision problems, hair loss, hair thinning, panic attacks, brain fog, pain and everything. Somebody here said in the first year that things will be worse over time and I remember how bad I felt. But things went on different for me. Am I cured except libido and ED? No. But life is bearable for me and as I said if I cure my sexual complains, I wil say that it is over and what doesnt kill you makes you stronger..

3 hours ago, MrErdem said:

Please dont doubt it. If I solve my libido and ED, I will consider myselfy cured.
I improved very much over time. I did'nt do anything special but believe me I was in a very very bad situation. I was sick and tired, tremor, tinnitus, weakness, suicidal state, vision problems, hair loss, hair thinning, panic attacks, brain fog, pain and everything. Somebody here said in the first year that things will be worse over time and I remember how bad I felt. But things went on different for me. Am I cured except libido and ED? No. But life is bearable for me and as I said if I cure my sexual complains, I wil say that it is over and what doesnt kill you makes you stronger..

If it makes you guys feel better, I was in an incredibly tierd state last summer, but have found more energy to do things. Honestly, I think ECT, TMS, and Effexor helped with that.

Also, (on a note of lower mental health) did anyone feel like they were dealing with anxiety depression set on by feeling like certain exestential forces were screwing with their heads in the years/months PRIOR to taking accutane? In my case, looking back now, it almost feels as if some kind of spirit was angry with me over something I had done, and hearded me towards accutane. Honestly, the more I think about all of the coverups, the "this stuff permaneantly corrupts your own state of being", and mysteriously nobody knows why, and so manu professionals deny what is going on, and this stuff is so low key that hardly anyone truly knows the risk until it's too late. Honestly makes me feel like a spirit did led me into this. The emotional rollercoaster and almost psychotic anxiety state I was dealing with, combined with a mysteriously high libido, all aspects I had traced back to some kind of angry spirit BEFORE TOUCHING ACCUTANE all put me into a state where I was almost BEGGING not to be so emotional, or horny. Ironically, it's as if the spirits were like one of those dark genies that take what you wish for, and twitst it in the darkest way possible.

To conclude, I am here because the spirits hated me and gave up on me.

Ps note to moderators, please do not block this post for sounding too psychotic, I just need to see if anyone else was hearded into this state to the proven degree that I was.

This was the blood test I got back in April. Nothing crazy with it really, but to be honest.. not a lot was on there. Clearly didn't ask for the right stuff. Let me know if anything catches your eye though! 

Also weird timing...

Just had a strange "popping" sensation in my left ear followed by a muted/slight tinnitus sound. Definitely assuming it's some form of inflammation attacking the Eustachian tube or middle ear. Got my referral to the ENT today. Will schedule an appointment and hopefully he sees some inflammation in my ear and on my vocal folds. Because then I will request prednisone and begin experimenting.

On 6/6/2017 at 0:01 AM, mDi said:

Anything is worth trying at this point. Keep trying until the problems are resolved.

Since having problems with Roaccutane for about a month now I actually complained to a co-worker about my issues and he told me his older brother was one of the original testers for the drug when it come out years ago. He told me Roaccutane is poision and that it ruined his brothers life. Since Roaccutune, my appetite is completely gone, I cannot eat or drink anything without feeling greatly ill. I'm absolutely miserable, I can barely leave the house -- I'm only 18.

Is there anyway you could get me the contact details of your co-worker (if he agrees)? i will PM you my email address.
Hang in there - a month is not a long time. Try the gaps diet and see if you improve.

On 6/6/2017 at 0:45 AM, mDi said:

I just called my doctor and in my last blood test I wasn't tested for my Vitamin A levels so I requested another blood test and I will report on my results ASAP.

thank you so much - you are on the ball and acting so quickly. Don't let you derm/GP off the hook because they will try and talk you down and probably tell you to avoid forums. B******* they are not the ones taking this poison.
Get all your hormones tested - actually there is a recommended list somewhere - i could track t down for you.
Very interested in Vit A status.

On 6/6/2017 at 5:45 AM, mDi said:

I just called my doctor and in my last blood test I wasn't tested for my Vitamin A levels so I requested another blood test and I will report on my results ASAP.

Just checking to make sure you know not to take ant SSRI'S

On 6/6/2017 at 8:36 PM, MrErdem said:

Please dont doubt it. If I solve my libido and ED, I will consider myselfy cured.
I improved very much over time. I did'nt do anything special but believe me I was in a very very bad situation. I was sick and tired, tremor, tinnitus, weakness, suicidal state, vision problems, hair loss, hair thinning, panic attacks, brain fog, pain and everything. Somebody here said in the first year that things will be worse over time and I remember how bad I felt. But things went on different for me. Am I cured except libido and ED? No. But life is bearable for me and as I said if I cure my sexual complains, I wil say that it is over and what doesnt kill you makes you stronger..

I am begging you guys to send an email highlighting your side effects and how this drug has affected your lives.
The review is going on right now!
One group email will take no more than 20 minutes.

Please, please please - we can't keep letting kids die!
[removed]

6 hours ago, cnb30 said:

If it makes you guys feel better, I was in an incredibly tierd state last summer, but have found more energy to do things. Honestly, I think ECT, TMS, and Effexor helped with that.

Also, (on a note of lower mental health) did anyone feel like they were dealing with anxiety depression set on by feeling like certain exestential forces were screwing with their heads in the years/months PRIOR to taking accutane? In my case, looking back now, it almost feels as if some kind of spirit was angry with me over something I had done, and hearded me towards accutane. Honestly, the more I think about all of the coverups, the "this stuff permaneantly corrupts your own state of being", and mysteriously nobody knows why, and so manu professionals deny what is going on, and this stuff is so low key that hardly anyone truly knows the risk until it's too late. Honestly makes me feel like a spirit did led me into this. The emotional rollercoaster and almost psychotic anxiety state I was dealing with, combined with a mysteriously high libido, all aspects I had traced back to some kind of angry spirit BEFORE TOUCHING ACCUTANE all put me into a state where I was almost BEGGING not to be so emotional, or horny. Ironically, it's as if the spirits were like one of those dark genies that take what you wish for, and twitst it in the darkest way possible.

To conclude, I am here because the spirits hated me and gave up on me.

Ps note to moderators, please do not block this post for sounding too psychotic, I just need to see if anyone else was hearded into this state to the proven degree that I was.

Did you send an email outlining your experience?

2 hours ago, Colinboko said:

Also weird timing...

Just had a strange "popping" sensation in my left ear followed by a muted/slight tinnitus sound. Definitely assuming it's some form of inflammation attacking the Eustachian tube or middle ear. Got my referral to the ENT today. Will schedule an appointment and hopefully he sees some inflammation in my ear and on my vocal folds. Because then I will request prednisone and begin experimenting.

I can almost guarantee he's not going to prescribe prednisone as initial treatment. It would probably take a hell of alot of convincing. I would ask him to get your throat scoped( which he should do) to check for signs of redness or inflammation. (at this point you could maybe sort of lie and tell him you've already tried ppis for acid reflux and allergy pills/steroid nose sprays for allergies, to escalate things and it could be your best shot of getting steroids. I would stick to your guns and say all your symptoms were triggered by accutane.)

I've had a throat scope done twice and it showed signs of inflammation both times.
he's probably not going to see anything wrong in the ears, but will probably refer you for a hearing test. I'd skip it. Its a waste of time and money.

@mariovitali
Came back at a pretty good number. This doesn't rule anything in or out, just showing that its normal.
A lower number is better btw.

Osteocalcin, Serum 17.5 ng/mL range 3.2 - 39.6

Vitamin A, Serum 58 ug/dL range 24 - 85
it would be interesting to see this test from someone just off accutane though.
same with b12, zinc, and copper.

this test I took, the doctor told me to retest again in 12 weeks. This goes hand in hand with some mthfr gene mutations for predisposing for basically a thick blood condition more prone to blood clots. Not sure about this one yet.

Antiphospholipid Antibody Panel

http://www.questdiagnostics.com/testcenter/TestDetail.action?ntc=14890

Antiphospholipid syndrome - Symptoms - NHS Choices

The actual frequency of APS in the general population is unknown. One to 5% of healthy individuals have aPL antibodies.

@guitarman01

It appearsthat we want to be looking at the ratio of undercarboxylated/carboxylated osteocalcin. Not sure if you mentioned this in your posts before.

https://www.ncbi.nlm.nih.gov/pubmed/19450370

2 hours ago, guitarman01 said:

I can almost guarantee he's not going to prescribe prednisone as initial treatment. It would probably take a hell of alot of convincing. I would ask him to get your throat scoped( which he should do) to check for signs of redness or inflammation. (at this point you could maybe sort of lie and tell him you've already tried ppis for acid reflux and allergy pills/steroid nose sprays for allergies, to escalate things and it could be your best shot of getting steroids. I would stick to your guns and say all your symptoms were triggered by accutane.)

I've had a throat scope done twice and it showed signs of inflammation both times.
he's probably not going to see anything wrong in the ears, but will probably refer you for a hearing test. I'd skip it. Its a waste of time and money.

@mariovitali
Came back at a pretty good number. This doesn't rule anything in or out, just showing that its normal.
A lower number is better btw.

Osteocalcin, Serum 17.5 ng/mL range 3.2 - 39.6

I'm a professional performer haha. I'm super close with my ENT. He has prescribed prednisone to me wayyy before all this shit happened even for the slightest bit of inflammation. So we're all good. I still want my ear checked. Feels like there could certainly be swelling..

also @guitarman01she told you to retest in 12 weeks? Wtf is that about? I'd be PISSED

11 hours ago, mariovitali said:

@guitarman01

It appearsthat we want to be looking at the ratio of undercarboxylated/carboxylated osteocalcin. Not sure if you mentioned this in your posts before.

https://www.ncbi.nlm.nih.gov/pubmed/19450370

Yea I think osteocalcin serum is really the only thing I can test that's widely available , unless you see any other tests.

Based on the fact that I have antiphospholipid antibodies I'm not sure at this point if vitamin k would be beneficial or antagonistic.

11 hours ago, Colinboko said:

she told you to retest in 12 weeks? Wtf is that about? I'd be PISSED

It's standard in how they diagnose this. Also to make sure it's not a false positive. They might not even consider it a condition unless you actually develop a blood clot (which who wants to wait for that to happen) but it seems there can be other symptoms like what I posted. I'll be seeking more opinions on this when I get a chance.

To be completely honest.. steroids may even help those with hair loss..

Especially if it's caused by inflammation

you guys ever had a b1 thiamine test?
apparently whole blood is more accurate than plasma or serum.